I forgot to mention I have been gluten free since 1998...will stay that way for life likely, but then who knows...I will continue to read about the experiences of others who have walked this path before I decide to retry it. I was also dairy free for 25 yrs and am now tolerating and thriving on certain kinds of dairy.

Remember I'm sharing my experience...not trying to convince anyone of anything...just answering the topic of the thread...what has worked for me.

I haven't tried store bought kefir. It's very easy to make at home if you are into that sort of thing and want to know more about that there are youtube videos and many places to buy the starter online.

I've been advised to start slow on any probiotics. (I can tolerate as much as I want now and feel great on them). Start with a tablespoon/day and see how your body responds to it. If you do ok on that amt for a few days, then increase the amount and keep going till you are at your desired amount. You can take a cup or two a day once your body adjusts.

When you start on probiotics of any sort it's important to start slow and build up to more. What happens is the probiotics (good bacteria) go to war with the bad bacteria in your system and you can have some side effects for a short time as your body adjusts, ie. gas, diarrhea. If that happens it just means the probiotics are eliminating bad guys...which is a good thing. I like to add kefir to my smoothies, and have taken water kefir (the non dairy version) for a while now...just started on the milk version and have no problems with it so far...had two cups of it today.

I think we're all trying to figure this out as best we can, but at the end of the day we don't have robust science to give us clear answers. We have a lot of data, some of which are scientific observations, and most of which are anecdotal evidence. The best we can do is to try out a lot of things and see what works for us, and then write about it here, so that other people can get ideas. I find it especially helpful when people say their symptoms and the foods they can/can't handle -- then I can see who fits my problem the best, and hope that what worked for them will work for me.

I'm fermenting stuff like crazy (kefir grains coming to me on the slow mail barge), living off homemade pickles and sauerkraut, eating whatever I can. Which is exactly ten foods. I'm trying a new one today -- lean cold-cut chicken. And tomorrow, wild Pacific smoked salmon. There are worse problems than having to sample various meats.

Still, though, I would love to try these miracle diets. People rave about the SCD, GAPS, and Paleo stuff. But the basic SCD diet makes me ill, and the only starches I can handle are rice and corn and for protein, only fish, and that in tiny quantities (fructose/saturated fat/everything malabsorbtion + mercury dangers). Did I mention I hate fish?

The most serious problem here is that these are ketogenic diets. I even wrote the SCD folks to ask about it and they insisted ketosis is unfairly maligned and is actually quite safe -- and that the diet needs to be ketogenic. But, I need calories. I need to eat. I've been starving myself my whole life -- now that I have a roadmap to health, I want to thrive for once. If that means eating grits for breakfast and meat-rice-avocado "sandwiches" for lunch every day, that's what I'll do.

Rats, now I'm reacting to the chicken. Oh well, let's see how the salmon does tomorrow...

Ya, SCDiet doesn't work for everyone, the author of the modern book on it was a biochemist who spent 12 years studying the science behind the diet. She says if you aren't improving after a month on the diet to discontinue. There are people who just don't respond well to it and you are clearly one of them.

I hope the kefir helps you and that you can find more foods that work...it's frustrating. Don't think I was ever down to 10 foods but close and I've eaten so much fish I should look like one. I was digesting virtually nothing for a time and living between my bed and the bathroom. There are some good supplements out there designed to heal the gut wall...I was on GI repair for a while. Have you tried anything like that?

You are right coffee does not have gluten in it...it has a protein that is similar to gluten protein and for many with Celiac Disease it causes problems...I'm apparently one of them. For me it was a factor.

In 1952 the mainstream of medicine took the approach that gluten protein alone was the problem underlying celiac disease but the problem is more complex than that, prior to that...

Dr. Haas treated over 600 cases of celiac disease with his Specific Carbohydrate Diet, maintaining his patients on it for at least twelve months, and found that the prognosis of celiac disease was excellent. "There is complete recovery with no relapses, no deaths, no crisis, no pulmonary involvement and no stunting of growth."

In 1951, Dr. Haas, together with his son, Dr, Merrill P. Haas, published The Management of Celiac Disease, the most comprehensive medical text that had ever been written on celiac disease. With 670 references to published research, the book described celiac disease more completely than had ever been done before.

Fortunately this information is now available and more and more people are finding they are healing from more than just celiac disease on this diet.

Another good link that explains things much better than I can is found here. There is so much more info online if you start to search. I figure we owe it to ourselves to be informed as much as we can.

Yes, I read about Dr. Haas' work years ago. He treated babies with failure to thrive and bloated bellies-----with bananas.

Were all those babies celiacs?--who knows---maybe it was some other digestive issue?.All malabsortion diseases were lumped together at one time as "coeliac" (i.e. wasting disease)

"In 1951, Dr. Sidney V. Haas and his son, Dr. Merrill P. Haas, published their book "Management of Celiac Disease," which detailed the doctors` years of success in using diet to cure various intestinal diseases including colitis and celiac disease. Dr. Haas`s approach was a groundbreaking approach to the management of intestinal disease."

The operative word is "management" . Not cure..Some did not survive the banana regime.

But many doctors implemented this banana diet for babies with all sorts of digestive issues. They became known as the "banana babies" of the 30's, 40's and 50's. My cousin's wife was one. Some stayed in the hospital for as long as 9 months and then, continued to eat only bananas for a few more years.

Many of these children went on to reintroduce more carbs and then, resume a normal gluten-filled diet.Some felt well for a while and some continued to have digestive issues their entire lives.

Whether they were true celiacs or not--was never established ---as there was no diagnostic criteria back then.

Until the connection to gluten was discovered by doctors in the Netherlands after World War II, no one really knew what sparked the autoimmune response.

The largest number of people currently being diagnosed with celiac are people over 50.Many of them were banana babies who were told they could resume normal diets. This was a gross error, obviously.

To say adopting the SCD diet after a celiac diagnosis will "cure" celiac disease is simply not true.

Does the SCD help alleviate more symptoms for many people? YES!And people should try it if they wish to see if it will help.

I am not arguing this point with you at all.

But to use the word "cure" is misleading. Once a celiac, always a celiac.

I would love to see a cure!! But the truth is, the SCD will not cure celiac disease..It may help manage it better, yes.

I hope you see the distinction I am trying to make here.

Best wishes to you!

1

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"Do or do not. There is no try. "- Yoda.

"LTES" Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.I. Win.

Until the connection to gluten was discovered by doctors in the Netherlands after World War II, no one really knew what sparked the autoimmune response.

I think it was 1952, unfortunately there is so much more to learn about this disease and we, along with millions of others, are proof that the conventional treatment for Celiac Disease is grossly inadequate. The current conventional treatment for Celiac is antiquated and ineffective long term...There is a real need for more research to be done.

To say adopting the SCD diet after a celiac diagnosis will "cure" celiac disease is simply not true.

Does the SCD help alleviate more symptoms for many people? YES!And people should try it if they wish to see if it will help.

I am not arguing this point with you at all.

Phew...that's a relief. I think it's likely a very individual thing...some claim they are cured.

I hope you see the distinction I am trying to make here.

Best wishes to you!

Indeed I do!

Clearly there is so much more to be learned about this disease. I'm not sure I actually said "I" believe the SCDiet will cure Celiac, but that Dr. Haas was known in his day as having discovered a cure. The banana diet is fun to read about. In the end the SCDiet was what he concluded was resolving his patients intestinal issues, bananas were not a big part of it, except that eating very ripe ones is on the allowable food list. Elaine Gottshall gives a very good explanation of the science behind why his diet works in her book Breaking the Vicious Cycle.

I wish my drs over the years had been better equipped to instruct me in the area of diet...most of us are left on our own devices to figure it out. So it's a relief to have some practical advice with scientific backing.

Let's not be naive about the popularization of certain kinds of treatments. The gluten-free food industry is a good example of that...over priced packaged foods, many of which could be classified 'junk food'...it's a total money grab. I'm leary of any 'remedy' that is a marketing scheme.

For me personally Celiac disease was not the first autoimmune disease I developed, which I'm more and more convinced was caused by leaky gut syndrome...(but where did the leaky gut come from? did gluten cause the leaky gut or did the leaky gut cause celiac disease?---I lean strongly toward the latter explanation.) The remedy for leaky gut is starving off pathogens with special diet and other means and rebuilding healthy intestinal flora with probiotics. Doing this seems (for me personally) to be reversing all my autoimmune diseases...slooowly. Others have experienced the same thing.

(We seem to have more than one train of thought happening in this thread and I apologize to the original poster if this is veering off into outer space. We could move it elsewhere.)

While I agree probiotics are necessary to repopulate the good gut flora,I do not see how this is a "cure" for celiac. It is part of the treatment in getting the symptoms under control.Everyone should do what they feel is best to feel well.Kind regards.

0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

“If idiots could fly, the sky would be like an airport.”― Laura Davenport

"Do or do not. There is no try. "- Yoda.

"LTES" Gem 2014

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac 11/01/10. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.I. Win.

I think there is a difference between "curing Celiac" and "healing from Celiac". These diets, probiotics, etc can help you "heal" but they are not a "cure". There is no reputable medical/scientific data that a Celiac can go back to eating gluten with no ill effects once thier gut is healed.

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"We have always found the Irish a bit odd. They refuse to be English."

Winston Churchill

May your glass be ever full. May the roof over your head be always strong. And may you be in heaven half an hour before the devil knows you’re dead.